Archive for February, 2008

Sometimes I do have days when I see myself moving on…remembering Ben and still being able to live life. Not because I am “living”, per se, the way I want, but because I realize what that will look like. For example, I did thinking today (in the car driving, because that’s when I do my best thinking) about the life we really led with Ben, and about how we made that decision to LIVE with him rather than wait for him to die. I commented to Scott the other day after reading through some older entries on this blog how LONG it took for us to really make that shift…that we said we were living with him, but we weren’t and had to be scolded (lightly) by hospice to start taking him out and get off the couch. Then we really did start going out, and we got better news from the Cardiologist…but I still see entries that are about what he looks like, what his color is, what he’s eating, how I interpreted everything as a sign of some sort. But somewhere there was a shift…and I see in my writing that we really did start living.

Then today I’m watching Oprah (because you know, I LOVE me some Oprah) and I hear these words from her guest: “A miracle is just a shift in perception”.

Sometimes these things just hit me and the Universe is trying to tell me something.

A miracle is a shift in perception.

What a gift we were given. Believe me, it’s not the first time I have said this, and it didn’t take recent events for me to realize it…I know and have always known that Ben was a gift….but the gift that I have only recently realized is that I was able to make that shift in perception…and really live with him. And that was when all the magic happened.

Fits nicely with some other words that have been echoing in my head all week, from Garth Brooks’ song “The Dance”…it’s not really one of my favorites, but I can’t help but realize how true the refrain is:

And I, I’m glad I didn’t know
The way it all would end
The way it all would go
Our lives are better left to chance
I could have missed the pain
But I’d’ve had to miss
The Dance.

me: hello?
male voice: Hello, can I speak to benjamin?
me: I’m his mother
male voice: I’m from …[home health care]…I’m calling because I need to pick up an oxygen concentrator
me: yup, we have it
male voice: I’ll be there at [time], and what is your name?
me: Kimberly
male voice: the name on the paper is Scott Randall
me: yes, that’s my husband
male voice: *long silence*
me: Benjamin has passed away, I just want this thing out of here
male voice: *silence*…okay, I’ll be there in a little bit

When he comes to pick it up, I put Toby in his crib (more on disastrous nap time experiments later), and let the guy in. He spends FOREVER winding up the cord, checking out that everything returned with it hasn’t been opened, etc…all the while Toby is SCREAMING. I can’t go and get him because I don’t want to leave the guy alone in my house for a minute. I finally ask him if I need to sign the paperwork he has in his hand and he says “oh yeah”…then as he’s leaving he tells me to have a better day.

On the paper? Where it clearly says “patient’s name”? Is Ben’s name. next to that it says who ordered the machine, and it says “St. John Hospice”. What kind of idiot wouldn’t put that together and at least TRY to be sensitive?

One thing Scott and I cannot stop saying so how thankful we are for Toby. He forces us to be present. He demands our attention, both for his basic needs, but also with his little smiles and coos that remind us that he loves us and we love him. He forces me to get out of bed every morning, which is good since I think most days it would be easier to simply pull the covers over my head and hide. He reminds me that the world needs me, that he needs me, and that things will be okay.
P.S. If you don’t normally look at the pictures, you want to see these.

I suspect that over the next few weeks (or months) I will occasionally (okay, often) be posting some posts that will make you think…”hmmm, that made no sense at all”. They are just bits and pieces. Things I want to share that don’t really justify an entire blog entry. Or sometimes they are so off topic that although they do take up an entire entry, that entry really makes no sense at all. You’ve been warned.

I don’t really know right now what I am supposed to do. Before you tell me that I don’t have to, or to do what feels right, I have to tell you that I’m doing those things. I’m making coffee and drinking it. Laying on the couch sick (you? who came to the funeral home and got my father in law, an aunt and uncle, two cousins and I all sick because you didn’t wash your hands? yeah, we’ll have words later…). I’ve been deciding what stuff I can go through of Bens, and what stuff I can’t. We ordered thank you cards. I play with Toby, and play and play because that is the best part of my day. But there are long stretches of time when I sit and stare, or walk around my house and straighten things up. I think about what I should do and can’t (laundry). Or I just cry. I don’t know how to make this stop, or I would.

The social worker from hospice came out today and spent some time with Scott and I, which was wonderful. She talked to me about preserving Ben’s smell…putting some of his clothes in a ziplock baggie. I am actually going to do this. We talked about other couples who have gone though this, and she said there are a few that are willing to talk to us when we’re ready. I’m so in awe that people could do this, talk to newly grieving parents. Because right now I can’t ever see a time when I could do that and not use it as a therapy session for myself instead of listening to someone else.

I am so thankful that I can be present with Toby, and play with him and not be sad. He makes me so happy…and I”m so glad that he is young enough to be spared the pain of losing his big brother. Because I don’t know that I could navigate this path and help him find his way too.

sent this to me recently, after writing it as a tribute to Ben. Ben had a stuffed elephant that was the first toy he really became attached to and played with…we named him Senor Alfonso Elephante and made all kinds of stories up about him. Melon wrote this as a conversation between Ben and Senor. We read this at the service yesterday and there wasn’t a dry eye in the house, including ours. What a beautiful thing this is….we will always treasure it. I also want to add that after the service we were talking to Ben’s cardiologist and he said he really enjoyed all the not-so-subtle digs at the medical community…he has a great sense of humor and perspective on life, so I enjoyed hearing that. 🙂

Señor’s Final Command

Señor Alfonso Elephante is a rare South American Tri-Color Elephant. In 2006, he came to theUnited States in search of a comrade to assist him in his quest to take over the world. His searchled him to West Bloomfield, Michigan, and Benjamin Scott Randall. He trained Ben every day,teaching him to steal the hearts of other humans, confuse the medical community, and spreadlove to everyone. This is their final conversation, held on the morning of February 14, 2008.Señor Alfonso Elephante awoke, shook his trunk and took a big stretch. He nudged his bestfriend and partner-in-crime Ben Randall. “Benjamin, my friend, you must wake up.” A sleepyBen looked at him with tired eyes and acknowledged him with all the strength he could muster.“I barely slept last night, Señor,” said Ben. “You know I haven’t been feeling well lately. Todayis not a day for us to work on conquering the world.”

“I know you are struggling, my friend,” replied Señor. “It hurts me to see you in such a fashion.You have been such a hard-working warrior. Do you have any idea what we have accomplishedtogether?”

“Well, I guess we’ve done a few things. But there are so many things we haven’t done. I’m justfiguring out how to use that fork thing. I’ve learned how to play by myself. We’ve conned Mominto letting us look at stuff on the television thing. But I haven’t learned how to chase the cat orhide stuff or tell everyone what I’m thinking.”

“Ah, yes, Benjamin. There are some things you have not done, but you should not focus on that.Look at the things you have done.” He pulled out his journal. “The doctors said you would onlybe here for a week. I had so much for you to do that it took one hundred two more weeks. Yourvery most important job was proving the medical community wrong. I believe you have donethat, no?” Ben smiled as much as he could as Señor continued. “You convinced your parents totake you home instead of keeping you in that sterile hospital. They enrolled you in school, tookyou on vacations, and dressed you up for Easter.” Ben groaned.

“The sailor suit. Mom sent that picture to everyone!”

“Yes, my friend, she bought the sailor suit. I must say you were quite dapper in that.” He turnedthe pages of his journal, showing Ben his milestone pictures and emphasizing hisaccomplishments. There were month birthdays, Mother’s Day, and Father’s Day.”

“The leaky diaper salute!” Ben interrupted with a sly grin. “I had to give Dad a special present!”

“There was your first haircut. I was not impressed, but you were a bit shaggy. You looked likeyour Auntie Melon did in the morning back in her straight hair days.”

“I thought it was more like Don King.”

“You obviously have not seen pictures of your Auntie Melon with straight hair.” Señor returnedto his journal. “There was the trip to Ludington and your first boat ride, your first family reunion,and that trip to the UP. Your first summer was busier than most kids that age, and you met somany people and touched so many lives. You worked very hard and did a lot for ourorganization. You convinced your mother to stay at home with you instead of going back towork. I never thought we would be able to do that, but we did.”

“Yeah, that was a difficult task. She had to give up a lot of her extras and cut down on lip balmand watch her money spending. She had to give up being around big people all of the time to bearound me.”

“Yes, Benjamin, but then she realized you were the teacher, and she and your father had so muchto learn from you. They learned people with disabilities have so much potential and want to livelife to its fullest. They learned to let you do whatever you wanted, and to encourage yourdevelopment. They spread the word to all of your Internet fans and educated them on DownSyndrome. We raised so much money for that first Buddy Walk! I knew we could do it!”

“That’s because I’m so stinkin’ cute.”

“We are so stinking cute, Benjamin. We. Do not forget this is a team effort.”

“Whatever. Whoa, what is that?” Ben pointed to a picture of Kym in makeup and jewelry. Is thatMom?”

“Yes, Benjamin, that is your mother. That is the way she used to be on a regular basis, but shenow knows she does not need to worry about what other people think when they look at her. Shehas learned to dress comfortably on the outside and be comfortable on the inside. I doubt she willever wear the Squirrel Suit in public, but we did make some progress in that area. Her attitudeeven influenced your first Halloween.” Señor turned to the pages with Ben’s Halloween pictures.

“What? Are you talking about my Man Bug costume?”

“Yes, Benjamin. Do you know how many parents would not have dressed their son in that? Yourparents the rebels did not care. Even I grew to like the idea after the initial shock. I wanted aZorro costume with a sword, or a camouflage battle uniform, but one does not always get whathe wants.”

“Hey, the red matched Naeem’s lobster suit. I thought the Man Bug was awesome. We were agreat pair.” Ben and Señor continued their walk down memory lane, from Ben’s firstThanksgiving and taste of Jell-O to his first Christmas. They took extra time looking at Ben’sChristmas picture sitting in his Bumbo chair wearing snowman pajamas and a Santa Claus hat.There were entries about Ben’s second car seat, the first time he clapped and rolled over as proofhe was reaching his therapy goals, and the first time he was able to grab Tas, the family cat.

“Aargh,” Ben said, “there are pictures of Mom’s cleaning spree before my birthday. That wasmad. They bought new blinds for the windows and vacuumed and dusted and just went crazy.I’m sure my aunties wouldn’t have cared about the dust. We are human, you know, and I cantake up a lot of an adult’s time and energy.”

“Yes,” said Señor, “that was the Type-A in your mother coming out. I was worried I would endup in a toy bin somewhere. That was an extremely tense moment for me.” They continuedturning pages, finally reaching pictures of Ben’s first birthday. “Ahh, this is your first birthdaycelebration. This is a day they said you would never see. They did not know we had an agenda.We had business to take care of, and we were going to get it done.”

There were more memories, of a picture at the mall with the Easter Bunny, a wild ambulanceride to Children’s hospital, and a trip to Point Pelee in Canada with Scott’s family for birdwatching, and the first time Ben said “bye bye” after Kym prompted him. They laughed at Ben’s“I have a secret” shirt that announced Kym’s pregnancy to the online world. “I think they wereready,” said Señor. “You had to teach them so much about being parents. I thought they wouldnever get it. I was sincerely worried. I wanted to buy a Doctor Spock Child Care book online, butI just could not make it to the computer and I do not have a credit card. They figured it out ontheir own, and with the help of your capable grandparents. You were the ultimate science projectfor them.” Señor read entries chronicling Ben’s progression through therapy, from sitting withsupport to sitting without support; play dates with Naeem; adventures with Aunt Karen; and asecond Halloween, this time in a giraffe costume. He finally reached the second biggest day ofBen’s life: the day his brother Toby was born.

“Mom sure was happy when he finally came. He was huge!” Ben stared at Toby’s first pictures.

“Yes, he was about twice your size. You did not prepare your parents for something so massive,but at least they knew basic things like diapering and bathing and burping.”

“Sad pumpkin,” said Ben.

“Toby was a different challenge. He did not let your parents sleep. They had their world turnedupside-down again. It was a great accomplishment on our part. We have done so manywonderful things.”

“We have,” said Ben, “which is why I think I should be able to sleep a little longer today.There’s no rush to work. I am tired.”

“I know you are tired, Benjamin. You have been an outstanding comrade. You taught people tolive as if there will be no tomorrow, but not in fear. You taught people about children who are,how do they say it? Ah, yes, with different abilities, I believe. You taught so many people somany things. You captured the hearts of people everywhere. We have changed the world andmade it a better place. Your work here is done, my friend. Get up and bid your farewells to yourfamily. It is time for your ultimate reward. You have earned it.” Ben had a puzzled look on hisface as Señor continued. “I am releasing you, Benjamin. You are moving on. You will no longerstruggle. You will be able to do everything you have ever dreamed of doing.”

“Move on? You mean… like not be here anymore? I’m not sure about that, Señor. What willeveryone do? I can’t leave. I have a birthday next week. I haven’t taught Toby my cool tricks. Ihave to go back to therapy and see my friends. I can’t leave. I just need to sleep.”

“No, Benjamin, it is time. You have worked very hard, and I am very proud of you. Your familyand friends will be in much pain, but they will survive. You have taught them so much that youwill never, ever be forgotten. The people will remember you as a strong, heroic, brave little boy.Go, Benjamin. Take your reward. You will still be able to look over all of them, wherever theyare, but your struggle is over. The battle is won.”

Later that day, after spending time with his family, Ben answered the call from above, obeyingSeñor’s final command. “Rest well, my little warrior,” said Señor.

But… We feel so strengthened and moved by the words and presence of everyone the past six days. I don’t just mean those who came out physically…our friends who are far away, we know you are thinking of us and praying for us and we can’t say thank you enough.

Scott and I are the parents and the people we are because of the people who love us.

This website is not going away. Not only do I look forward to sharing the next stage of “living with Ben”…which I guess is living without my precious Ben…I look forward to starting to share new stories and new pictures of Toby. He has been such a comfort to us in the past few days, and is the light of our lives right now.

You will never know what your support means to us, but as I write I will try to let you know.